SWAG brag

SWAG is a very important Diabetes term of endearment. It means Scientific Wild Ass Guess and it is used when there is no carb info available and you have to make your best guess.

So, when you take your T1 kiddo for some ice cream that was her promised reward for an outstanding swim meet performance, but then you realize that her BG is not optimal for ice cream…

…you take her anyway because a promise is a promise. And then she orders a milk shake, which is OK because a promise is a promise. So you SWAG the carbs at 100 g. (!) And she needs to give herself a shot because it’s a shit load of insulin and there’s not enough in the pump at the moment. Besides, a shot is more effective because she’s high already.

She does the shot without complaining and enjoys the hell out of her shake. But you still second-guess yourself and wonder if you should have given even more insulin.

Then a couple of hours later you ask her to check BG and BAM 💥

NAILED IT!

It takes a village

Today, ok World Diabetes Day, I thought it would be fitting to talk about how many people help us make it work. I often hear stories of other PWDs and parents of T1 kids feeling alone. I am beyond grateful that from the moment V got diagnosed, we never felt alone or isolated.

When V was diagnosed and hospitalized, our friends and her friends came to visit and cheer her up.

Practicing doing shots at the hospital

Before she was even discharged, our amazing school nurse called us and helped us formulate a game plan. She was our strongest advocate and supporter as we learned to navigate how to manage T1D in school.

V’s teachers showed nothing but care and support and tried their best to accommodate her needs.

V’s friends are her cheerleaders and advocates. She is loved and accepted for who she is, with all of her dietary needs, medical supplies and robotic parts. They don’t flinch when she has to poke her fingers or do a shot. And their parents are also very supportive and accommodating. Many of them even welcome her for overnights, which includes helping her manage things at times, even at night.

Soon after V’s discharge I got a phone call from JDRF parent volunteer who checked in with me and connected us to a local network of T1D families. This gave us an opportunity to connect to others in real life and online. The group had been a tremendous source of support for our entire family. And V got to meet many other kids with T1D.

V and her diabestie!

Then we discovered DOC – Diabetes Online Community – where we learned so much more and met amazing people.

V’s endocrinologist rocks. Every single visit she takes time to address our questions and concerns without judgment and with lots of care and consideration.

We are so fortunate to have two local diabetes camps. V had been attending one or both every year since diagnosis.

Fun at diabetes camp!

Our family and friends have stood by us from day one. They may not understand all the intricacies of T1D management but they sincerely try. Many of them go out of their way to make sure V is always included and her needs are taken into consideration.

Love my tribe!

V’s swim coaches take great care of her. They remind her to test during practice, are calm and supportive is she has a bad hypo (like a 29!), and otherwise treat her no differently than any other teammate.

Living with T1D can be a lonely experience. We are so grateful for our village. Our hope is that as V is gets older she will continue to surround herself with supportive people. No one should go it alone.

Another sleepover story in screencaps

Once upon a time, on a lovely September day, V went to her friend’s house for sleepover. We made sure to put a new Dexcom sensor on a few hrs prior so that it would be working well and give us a peace of mind. V went to a sleepover and everything was perfect and everyone slept soundly and lived happily ever after…

Hahahahahahaha. Right.

Mere couple of hours into the evening, and following some pool time, I get this text

Great. We didn’t pack an extra sensor because it was not supposed to just fall off. No Dexcom, no remote monitoring possible, no easy access to BG data and trends. OK, time for Plan B!

Then it was time to figure out night time strategy. If Dexcom was working, we could rely on it to alert to any issues at night. Alas, no such luxury.

Don’t you love it when you have to ask your 13-year old to wake up at 3 AM to check her BG? I felt that this occasion called for some serious sarcasm.

And back to business…

Seriously, whyyyyyy?

Promptly at 2 AM…

At least things were more or less on track. Luckily no more checks or wake-ups were needed.

When we finally spoke in the morning, it was alright…

The End

This GF part of our life

This is a familiar scene for us: waiting for the doctor. And when you are in the “Buy One Autoimmune Disorder, Get One Free” club, like us, you get to experience this scene more often.

Today was V’s annual GI follow up. Things are OK. The antibodies are still not at normal levels but continuing to trend down. The doctor told us that they may not get to a normal level because adhering to a strict GF diet is hard unless you don’t eat outside of the house and maintain a full GF house. Can’t agree more! We are very careful both at home and outside, but accidental cross contamination happens sometimes. But everything else is looking good, V is not experiencing any other/new/troubling symptoms, so the doctor is not concerned and we are to stay the course. That’s a relief because between endocrinologist, dentist, orthodontist, and allergy and asthma specialist, V has some kind of medical appointment just about every month. We will gladly keep our GI visits to once a year.

Bonus good news: unbeknownst to us, when V got her Celiac panel done last week, they also did her A1C. And it’s pretty darn good, which earned V enthusiastic praise from the GI doc.

Snapshot of our life

Just another morning. Unfinished cup of coffee waits for me as I assist with pod change. Diabetes paraphernalia everywhere on the table. Insulin vial. Sugar bowl close to it, lol! Two old pods. Why two? I can’t remember. Dog photobomb. He always photobombs, he’s an attention hog. It’s totally not normal and yet completely normal. This is our normal.